A determined family are gearing up for a 240km cycle to raise awareness of the rare disease which killed their two-year-old girl.

Katie Rose Rodgers lost her eight-month battle with mitochondrial disease in December.

Her family from Arranmore Island, Co Donegal, have set up a foundation in her name to help others with the devastating condition.

Mum Fiona, 28, said yesterday: “When Katie was diagnosed in April last year I’d never heard of it, which is strange as I think about it every day.

“It’s classified as very rare but I know five children, including Katie, in Donegal alone who have it.”

“We also have one-year-old twin girls and they have a 25% chance of having the disease. They’ve had tests and so far, so good. All we can hope is they’ll be OK.

“A couple of months ago, a few relatives approached us and said they would like to do something in memory of Katie. We were still heavily grieving but now it seems right. Some of our family are going to cycle from their home in Glasgow over four days to Katie’s resting place in Arranmore.

“It should be a really nice event to have all of our family gather there and our target is €4,000 but anything above that would be a welcome bonus.”

Katie Rose Rodgers and family

Despite their grief, Fiona and husband Sean, 31, are determined to turn their loss into something positive.

She told the Irish Mirror: “We have three main aims – the first is to raise awareness.

“Katie was diagnosed in Canada, where we lived at the time, and I remember when we came home and told our GP she had to look it up.

“It’s great that she was so willing to learn more about it but if doctors don’t know about it then it won’t be at the forefront of their mind and this could end in delays and misdiagnosis.

“Our second goal would be to fund research projects. We think these are going to be in the UK as we haven’t come across any here. We are looking into a specialised one in Newcastle.

“Thirdly, we would love to be able to provide financial assistance to the families of children with mitochondrial disease.”

The foundation’s first fundraiser is the ambitious 240km cycle from July 29 to August 1.

Mitochondria are found in every cell, apart from the red blood cells, and provide around 90% of the energy to the body.

Fiona said: “They are the body’s powerhouse so they start to fail and slow down until eventually they just blackout.”